Friday, May 18, 2012

Special Needs Spotlight: Cole

My name is Missy Hawkins and my husband, Paul, and I have four
kids, Telise (8), Paityn (6), Cole (4), and Lincoln (10 months). Cole is a lively 4-year-old boy who loves
sports, cars, and throwing rocks. He
looks completely normal on the outside, but he has a chronic auto-immune
disorder known as Eosinophilic Esophagitis/Gastroenteritis. He cannot eat food. His body treats food as if it were a foreign
invader and attacks the stomach, esophagus and duodenum. The
eosinophils or white blood cells that attack these parts of his body cause
abdominal pain, constipation, diarrhea, vomiting, weight loss, and
internal damage (to the point that he can't swallow food anymore, or the lining
has sores). Cole was diagnosed at 6 months old when he was
failure to thrive and he receives his nutrition in an amino-acid based
formula that is very expensive. Since
the formula isn't very appetizing (it tastes like feet!--we've tried it) and
Cole doesn't always care if he eats, he doesn't eat enough of it by
mouth....so his formula can be put directly into his stomach. He had a N/G tube (tube that goes down
his nose into his stomach) when he was a baby/toddler and now he has a G-tube(a
tube that protrudes from his abdomen which goes directly to his stomach). He calls his G-tube button his Ironman
button.

Some kids with his disease have hundreds of foods they can eat and
some have none; each of them may have a different experience with this disorder.After four years of food trials Cole has 4
"safe" foods he can eat - apples, pears, oats and potatoes.Because his disease is new and not that
common, (although it is becoming more and more common) the doctors are trying
to figure out what the best treatment plans are.It can be a struggle to find the
best medical help for him.He deals with
it exceptionally well and in most ways is a normal rambunctious four-year-old
boy!

***************

Miggy:Can you take me back to the day Cole was
diagnosed?Do you remember how you felt?Can you compare those first thoughts and
feelings with how you feel now?

Missy:The day he was diagnosed,
we felt overwhelmed, like a huge weight had been dropped on us.Our first thoughts were about how harshly this
would change Cole's life.What do you do
if you can't have food?How do you STOP
a kid from eating food?You can't watch
him 24/7.So many of our social
interactions revolve around food.What
about birthday parties, holidays, dates, or his wedding cake?Your mind jumps to all the negative aspects
of your new reality.What does he do
while we eat breakfast, lunch, or dinner?How am I supposed to be able to take care of him?

Now?It's amazing how time and
repetition make everything seem normal.We
feel as if this just our life.It's not
overwhelming or daunting or saddening.We
live a normal life, we try to make it as normal as possible.We
have been lucky in many ways and Cole seems able to deal with this (so far,
he's only 4).We wish he had more foods
and sometimes we get frustrated since we feel like the doctors don't always
know what to do, and we are learning along with them.His condition is very much an "O.k.,
let's try that.Why not?" kind of
treatment plan, which can be hard to get used to because it's not what you
expect from doctors/medicine.We don't
want the disease to be all that defines him.He is so much more than his disease.But day-to-day, we don't dwell on it, we just plug along!

Miggy:Help us understand how this disease is
different from having food allergies? (Or is it different?) Will
Cole ever outgrow this disease?

Missy:Eosinophilic
Esophagitis/Gastroenteritis has close ties with allergies, and many of the kids
who have it also have allergies.Since
allergies are basically the body treating the allergen like it is an invader
and attacking it, it is very similar to his illness.The bodies of kids with Eosinophilic
Esophagitis attack the GI tract.It is
almost as if he is allergic to all food.Some of his symptoms are typical allergic reactions, wheezing, rashes,
vomiting, anaphylaxis, etc. Unlike
some children's allergies, this is not something he can outgrow.Cole will most likely have this condition his
entire life.The goal is to find enough
foods for him to eat a normal diet.We are hopeful that someday he will have a few proteins, vegetables,
fruits and grains to maintain his diet without having to drink the elemental
formula.Some kids who have the disease
go into remission.Remission would be
amazing, but our doctors tell us that Cole is a pretty severe case and so right
now we just hope to just have some more "safe" foods.

Missy:He is fed
through the tube, which can take some time and can be messy(especially when he
tries to help).We have to replace his
tube at home ourselves every couple of months.He also picks at the skin around the tube, so it is painful for him.Because Cole receives a lot of his nutrition
through his G-tube, the tube is a prominent part of him.Fear of ripping out his feeding tube
restricts some of his movements.He
won't slide on his stomach, or down couches and even roll in the grass without
protecting his stomach.As you can
imagine, this is hard for a rumblin', tumblin' 4 year old!

We have to make Cole separate food and be careful that his food
doesn't come into contact with any other food.We have to be very careful about cross-contamination.I sometimes feel like I live on the set
of Chopped, the TV show on Food Network where they are given ingredients that
don't go together and they have to make something great with them.I have four ingredients and have to find
a way to make him cookies, pancakes, fruit leather, hash browns, fries, apple
crisp and anything else that I can think of. I can cook with pears, oats, apples,
potatoes, oils, salt and sugar--and that's it!.Anytime he goes anywhere, we have to bring food along for him, except
for In'N'Out French fries!

He is on steroids that he must swallow, along with other medications.Some
days he has constipation or vomiting or just feels sick, so we lay low those
days.He has become a champion puker, he
always hits the bowl.He can't use
normal toothpaste, soaps, or normal medicines (no children's flavored
medicines!).Many times they have food
proteins in them.He also has severe eczema and so we
have to lotion his whole body regularly.

When he is in a food trial, it can be a challenge to get him to try a
new food.He isn't used to flavors or
textures.If he fails the food (meaning
there are too many eosinophils), he looses that food.Getting him to like/eat the food, go through
the scope, and then taking away the food if he fails can be a little heart
wrenching.Cole understands really well
that he can't eat most foods, but that easy acceptance can also amplify his
disappointment when a food he's been eating for a few weeks (and in his mind is
o.k. to eat) is suddenly taken away from him.At the
end of the day, he's still a 4 year old trying to understand why EVERYONE else
can eat something and he can't.It can
be hard for him.Sometimes our whole family will avoid a failed
food for a while until he handles the loss of that food better.He
is usually optimistic, and sometimes it pulls on my heart-strings when he
says, "Someday I'll be able to eat that."Many kids with EoE spend a lot of time at
doctor appointments, feeding therapy, and trips to the hospital.It can be a physical, financial and emotional
drain.

Cole is usually really good about not "cheating" and eating
something that he is not supposed to.Unfortunately,
this has come through a few bad experiences.We once left him alone in a car with a hotdog for a little too long.He ate a bite of the hot dog bun and was
wheezing and throwing up for days.Since
then he hasn't eaten anything he wasn't supposed to.

Many kids with EoE have sleepless nights from pain.Cole just sits there at night.Sometimes I'll walk into his room and he
is just sitting there. Because of
this he is tired a lot and takes naps when he can get them.

For Holidays (Halloween, Easter, Valentines Day), Cole will exchange the
treats he gets for a toy that he really wants.He seems excited to give the treats to me and to have a new toy.We try to make traditions that revolve around
activities and not around food, so that he can play a part in family
traditions.

Miggy:What are the biggest worries you face for
your Cole?

Missy:Strangely, our biggest
fears regarding Cole don't center around food.We know that he will receive the necessary nutrition to stay healthy
(either by formula or hopefully someday solely by food!).Our strongest concerns center around his
social and emotional well-being.We
often worry that Cole will grow to be angry, resentful or depressed.Being
different can be hard!Especially as he
gets older.We hope and pray
that he has many foods someday....but even if he were to only have 5
foods, we want him to cheerfully adapt and be happy.We feel like we need to be the examples of
how to do that.If we as his parents
cannot find a way to be happy and at peace with the things we can't control,
how can he?I'm sure there will be
periods when he is angry and unhappy, but overall we want to help him develop
the coping mechanisms he'll need to happily navigate this world that
revolves around food.Whenever it gets
hard or we start to get frustrated, we try to remind ourselves that we need to
cheerfully adapt, we really hope he can do the same.

Miggy:Now for a lighter question, have you ever had
any funny conversations/moments you never imagined due to your special needs
situations?

Missy:"Do you want some ice
in your water soup?"For the first
two years of Cole's life he didn't have any foods to eat, so he ate "water
soup" for dinner every night (water and ice in a bowl).I think many people at restaurants and
parties were very confused when we fed our kid "water soup".

Many times when we see Cole chewing on something and don't know what it
is, our hearts skip a beat and we have this conversation:

The other night while we had guests at dinner I said to my 8 yr
old, "If that salt touches your food, you will permanently lose your
condiment privileges!" The guests
laughed and were surprised that at our house to use condiments is a privilege.It is a privilege and we need to be careful
about keeping the salt that Cole can eat from touching other foods.

Miggy:How can people best approach or respond to
your child?Is there something you wish
other people knew so as to avoid awkward or hurtful situations?

Missy:I would say, just
ask! For a while Cole had an N/G tube that went through his nose to his
stomach.One day at the movies this
little girl was staring and had questions for her mom.I heard her say, "let's ask them."
She came over and asked about it; it was not only a great opportunity for her
daughter to learn how to deal with her curiosity, but for Cole to learn about
being brave enough to answer the questions.

Another time, some elementary kids where calling Cole gross because he
had the tube in his nose and one little girl with them came over to him, gave
him a high five and said hello.To this
day, I wish I had gotten her name and told her mom how impressed I was at how
she handled herself with someone who looked different.I guess we can all do more to teach our kids
to be loving and accepting to those around us.

Also, don't be offended if you go out of your way to help someone and it
isn't exactly the help they need. Be
aware that sometimes the thought IS what counts.I have had wonderful people try to buy
special snacks or treats for Cole.They
are trying so hard to be accommodating and I always feel a little embarrassed
to tell them that Cole cannot have what they have bought him (it takes a while
to get good at reading all the ingredients in everything and to understand what
the ingredients mean).My heart is
always touched by those who put forth the effort to go out of their way and
bring something for our little man.I
hope they realize that and aren't hurt when they find out he can't have it.

Miggy:What is the biggest lesson you’ve learned
since becoming a special needs mom?

Missy:We can do hard things
and we can smile while we do them.Our capacity to deal with whatever trial/affliction/disease we are
faced with is constantly evolving.Things
that we were afraid of or things that we thought we could never
do (like replacing a tube into his body) can become commonplace and easy.People
always tell me how they don't know how we do it, and I think, it's really no
different than your life.Everyone has
things that they have to deal with and they can do it.I do feel like our Creator hasn't left us
alone, He has given us the tools we need and will help us through anything
we are facing.We can be uplifted and our
burden made light, no matter what that burden is.We are truly blessed in so many ways. So, I guess our faith has been
strengthened and has helped us.

***************

I want to thank Missy for sharing her lovely family and especially her wonderful son Cole with us. I have to say sometimes when I receive emails I'm completely surprised at some of the various diseases/conditions in the world. I never would have thought that there are people who can't eat food--or at least very little of it! I'm grateful to Missy for opening my eyes and educating me on this rare condition. Additionally, I really agree with her idea that you need to model for your children how to be happy and at peace with the things in life we can't control. Oh I get this, I really get this. A blessing and a curse I tell ya. Thanks again Missy!

As always if you or anyone you know would like to be featured in my special needs spotlight please email me at thislittlemiggy at gmail dot com.

8 comments:

Did you know that it's Eosinophil Awareness Week? My 2 year old nephew has eosinophilic gastroenteritis. This post made me cry thinking about him. My sister-in-law has been teaching us lots about eosinophilic disorders (http://thepursers.blogspot.com/2012/05/its-national-eosinophil-awareness-week.html), but I learned several new things from this post. Thanks Missy for your positive outlook!

Thank you so much for your great posts! I teach in schools and my eyes have been open to how parents cope with things. I am an adult that was recently diagnosed with EE! Mine is a minor case and when I avoid some foods I am ok. My family does not understand though and I realize I need to do a better job making them understand what is going on!!Jen in NC

My 1 year old was recently diagnosed with EE as well. We have been dealing with medical bills, allergists, feeding therapists, and overall craziness. Because he is only allergic to 5 major foods, the doctor's are optimistic that he may outgrow his food allergies rendering the EE dormant. Reading Missy's story makes me grateful for my son's situation, and gives me perspective to help me cope with the difficulties of feeding a traumatized, picky, allergic toddler. Thanks so much!